Question for those who may know. There are diffrent type of IVIG out there. I'm not sure if one is made to treat a specific disease more than another. I currenty just started Octagam 5% IVIG for CIDP, as I was recieving my initial dose, my labs came back confirming a Primary IGA Deficiency and the Immuneologist said to start IVIG but did not specify what kind. So my question is............would an IVIG for blood related issues (my blood does not make immunoglobulin A, antibodies to fight infections) be the same IVIG used to treat CIDP??
PS...Very odd that I was doiagnosed with the Hypogammaglobulinemia because I do not get sick often and when I do, I don't have a problem shaking it.
Thanks in advance!
I've had a primary immune deficiency disease (common variable immune deficiency) for more than 11 years. I have been getting intravenous infusions of Gamunex during that time. I believe that there are a number of people in Living with CIDP also using Gamunex. The IVIG products are similar, but not necessarily interchangeable. Some may work better than others for you, for example with respect to side effects. You might want to join the "IDF Friends" support group for people with primary immune deficiency diseases (http://idffriends.org/). Also, I rarely get infections but have a number of autoimmune diseases.
Thank you, this is all so new to me. It's a horrible feeling not knowing what the next day will bring.
I'm so afraid that I won't be able to care for my child let alone myself. Nobody understands what I'm dealing with as the say I look fine!!
Some comments about your hypogammaglobulinemia and wish for natural treatments for CIDP.
Since you were diagnosed first with CIDP, you probably have a neurologist. I don't know if you also have an immunologist. However, I think you should have both. Many of the treatments for CIDP weaken the immune system, but a neurologist may not appreciate that as well as an immunologist. I have both a neurologist and an immunologist and they frequently communicate with each other. Regarding infections, I think the most common infection in people with primary immune deficiency diseases is sinusitis. I had sinusitis (a chronically runny nose and postnasal drip) when I was diagnosed and I still have it, although it's less severe after 11 years of IVIG. I understand that some people are cured of their sinusitis as a result of IVIG treatment. If you don't have sinusitis, that's a good sign.
Some people in our group (including "Pablo" and myself) are taking the antioxidant alpha lipoic acid. I've been taking it for a long time, but I believe that the dosage was too low to do much good. There is a clinical trial using lipoic acid for treating CVID. For further info on this see: http://clinicaltrials.gov/ct2/show/NCT00962429?term=CIDP&rank=7. I increased my dosage from 300 mg per day to 1200 mg per day (the amount being used in the clinical trial) in early July. I think I'm seeing some improvement now in my stride and some reduction of pain in my legs.
Assuming your doctors don't have any objection, you might give this a try.